GREENE — Eight months ago, Pam Sirois was featured in a Sun Journal story about her battle with cystic fibrosis and her need for a double lung transplant.

She’s still waiting for that transplant.

“Waiting is hard,” she said. “It’s hard on my children and on my husband.”

But as she waits, Sirois has discovered she’s got more support than she ever realized.

“Between the fundraiser, plus the GoFundMe site and just personal donations, I’m still surprised,” she said.

Sirois, 43, has dealt with CF, a genetic, life-threatening condition, her whole life. For years, hardly anyone knew she was sick. Her treatments — 30 pills a day, four inhaled medications, a compression vest to clear her lungs — took hours but happened behind the scenes. She kept up with her nursing job, her husband and her three kids, so only family and close friends knew her lungs were functioning at 65 percent of what theirs were. Then 50 percent. Then 30 percent.

When her lung function hovered around 20 percent, Sirois went on oxygen. She had trouble maintaining her weight as her body burned through calories working to breathe. Too sick to work, she left her job in January.

Doctors said she likely had more than a year to live, but not more than five.

She’d thought about death her whole life, but she began thinking about what it would mean to her family. Her son, now 12, wanted her to get a transplant. Because she wanted him to know she had tried everything possible to stick around, she reconsidered the one treatment she had always shunned: a double lung transplant.

Earlier this year she was placed on the transplant list at Brigham and Women’s Hospital in Boston and she started going through the process to be added to the list at the Cleveland Clinic in Ohio.

In April, the Sun Journal wrote about the GoFundMe campaign and website, HelpPamBreathe.com, that friends and family had set up on Sirois’ behalf. The story also previewed the combination birthday celebration/fundraiser thrown for Sirois to both raise money for her transplant-related expenses and raise awareness about CF and organ donation.

The benefit was a huge success. The outpouring of support stunned Sirois and her family. 

“It was overwhelming. I pretty much stood in one place and everybody came up to me. It was good,” she said. “But my son had a hard time with it. He actually broke down in the middle of it, which was really hard. I think it all just came crashing down on him, the overwhelming support and talking about mom being sick. I think the reality of it all kind of hit home with him, which was tough.”

That benefit raised over $20,000. In all, friends, family and complete strangers have raised a total of $50,000. The money is sitting in a bank account, Sirois said, waiting for the expenses she’ll rack up when she gets her transplant. 

Sirois was added to the Cleveland Clinic’s transplant list in June. Transplant timelines are hard to predict, but doctors there have told her she could get new lungs within a year of being listed — probably not in 2015, but maybe 2016.

The wait has been nerve wracking.

“You just never know. I could get the call today,” she said.

But she tries not to think about it every day. She has other things to focus on: her son, her twin daughters, her husband, her family and friends.

“I live my life for today and when that call comes it comes. Then I’ll go crazy,” she said.

ltice@sunjournal.com

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